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Tuesday, October 8, 2013

A is for Absurd

Being the parent of multiple children on the spectrum has allowed us to be privileged to many types of well meant and "Absurd" advice. I thought I might remember and share some of the "advice" and "comments" we have heard through the years. Now these are actual comments we have heard from various people in the past 11 years.

1. Myth.....My cousins, sisters friend has a daughter who is autistic. They have cured her by not letting her eat gluten, dairy and something else. I don't remember. I will find out and let you know.

Truth.....Some children see amazing results following special diets. We have tried these diets with our kids. I don't want to say that they are wrong, but what works for one kid does not always work for another. Every one of our kids is different. Their meds are at different dosages. We have discovered foods that cause manicky behaviors, so we cut those from the diet. We tried Joey on a diet close to GAPS....and besides making our lives more difficult he made no improvement. But to say that a child is "cured" of autism is wrong. If a child gets better on a special diet, they were misdiagnosed. The celiacs site actually says that celiacs will cause autistic type behaviors. So a special diet is not for everyone.

2. Myth....It could be worse. They could be in a wheelchair.

Truth.....Yeah, our lives could be worse. One of the kids could be more severely handicapped physically. That would definitely present more of a challenge for us. But are you saying that the mental challenges, tics and OCDs that we face daily are easier than someone who is bound to a wheelchair. Yeah...I have to disagree with that thinking. When you see your 13 year old walk around and smack his head with his hand repeatedly because he is so frustrated about the emotional roller coaster he is feeling, walking is a blessing but the depression that he feels at times is so not worth all that.

3. Myth.....So is your kid one of those who can play instruments before they even touch them or can they solve quadratic equations in their head.

Truth.....No, not all kids with autism are savants. No, not all kids with autism are math genius. But kids with autism are smart. They are smart in ways that is really scary. Brayden has trouble writing, trouble understanding mass and weight, but he can hack our Linux Minecraft server and not blink an eye. He can crack our passwords on the Xbox. He can passcode my cell phone and lock me out of it. He is smart at math also. I think sometimes it catches himself off guard. I know the movie Rainman shows Dustin Hoffman counting cards....but the movies DO NOT show everyday autism.

4. Myth....Parents that have their kids labeled autistic are just using it as an excuse to cover up how bad of parents they are.

Truth....Oh yeah....we were seriously told this!!! In a noisy, area with lots of people, how frustrated will the average person become. I myself get very frustrated. The noises, crowds....it all equals too much stimulation to the brain. Some people can handle this well. I have to take many deep breaths....MANY deep breaths. A person with autism has a brain that is always wired. The smallest sound equals a BOOM! Every sound, the large amount of foot steps around them. They feel claustrophobic.

Deep breaths do not always work well. They might start screaming and cover their ears. To the person with autism, it feels as if their brain is melting. It's like an anxiety attack to you or I. We try to help with this by having headphones that drown out sound or limit high crowd situations, but that might not always be possible. I'm sorry if my child might disturb you for a few moments, but we try to remove them as quickly as we possibly can.

Instead of the rude comments....seriously....why don't you be a bit more empathetic instead of judgmental. Have you ever had an anxiety attack? Your heart races, you sweat, you feel like the world is melting around you, your chest hurts.....WOW!! All those things happen to my child all at at once, so I can't expect them to be quiet if they are scared about how they are feeling. That would scare the crap out of me! (Sorry...this one irritates me. )

Truth.....One on one attention for a child with autism gives them an education that is personalized to them. They can learn social skills. What they won't learn from homeschooling is alot of the bad habits, language and other issues that some public school kids face. They don't have to worry about bullying. There are lots of ways that kids with autism that receive social interaction that does not require a public school. It's a lot more work for parents, but very much worth it. Just remember being forced to be in the same room with people does not make it socialization....that makes it prison.

6. Myth.....OCDs are not real, your kid is trying to fool you.

Truth....Not all OCDs are about cleaning. Trust me, I so wish my boys had a cleaning OCD. It would make my life so much more simple. I wouldn't have to worry about Brayden's dirty bowls by his laptop or the LEGOs all over Joey's bedroom floor. My boys do have food OCDs that are annoying. Joey for instance will not touch a vegetable knowingly. It takes a lot of struggling to get him to some foods. Sometimes pot roast is ok, but a couple weeks later it is not. He is freaked out totally to try new foods. Is it frustrating...OH YEAH!! Do I try to continue to encourage...Yep!! Besides, what's the difference with Joey's OCDs and you giving in and letting your kid eat chicken nuggets all the time?!?!

OCDs can come and go. Brayden has some that come and go. They are worse at times than others. You can tell when he is stressed, that is when they can kick in.

7. Myth.....He hugs you?!?! I thought they didn't like hugs.

Truth.....First of all "they" is my son. "They" have names and personalities. "They" is not a nice term to use. Ok...on to the response. Some kids with autism do not like to be touched. Some kids only want to be hugged on their terms. Some kids crave hugs. Wow...that sounds like all kids! Kids with autism are still human, humans crave affection and attention. Some just in different ways.

8. Myth....You have to get them therapy...they won't ever live a normal life.

Truth....Who ever lives a normal life? Please, show me the person who has a stress-free life. Who has everything they have ever wanted. I want to meet them!!! Truth is, life is going to be hard. Therapy does not work for all kids. Yeah we learned that after paying $3,000 in speech therapy bills for Brayden. He never improved. And that total didn't include dealing with the school because of his absences and the mileage to and from the speech center. Do I want to concentrate on life skills....YEP!!!! I am teaching the boys how to cook simple meals. Joey is learning how to use the washer and dryer. Brayden is being taught simple household tasks like sweeping and wiping counters. As they mature, we make the tasks a little more difficult. Therapy does not work for all!!

9. Myth.....You may have caused your kids autism when you let them have vaccines.

Truth.....AHHHHH!!! Seriously....I don't go through enough everyday without a government conspiracy theorist throwing guilt at me!!! If I knew then what I know now, I most likely would not have followed along blindly about a lot of things. But there is always stuff we would have changed in our past. (I have seen my high school picture...I would not do that to my hair ever again!!)

There is no concrete proof. Have I read information and had my suspicions.....oh yeah! I am questioning any future vaccinations. With the raising rates of autism, the GMO foods, the poisons that are presented daily to our bodies, ......STOP...STOP....I don't even want to think about the "What If's".
We are moving on and I will try not to smack a person that says this to me again. We are working at natural alternatives to meds, adjusting our diet to more organic and non-GMO products. The "What ifs" will drive a person insane.

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It all boils down to one saying.....

Not all people in this world are alike, so why do people think all people on the Spectrum are alike.

I know people try to be helpful, and I don't mind people telling me about studies they see on TV or read about in magazine. Please do tell me about these things. You never know, if I can try and make our kids lives a little easier....I'll research it. We'll take it to the doctor.

But....Warning....watching Dr. Phil does not make you an expert. Don't be nasty about what you are saying. You cannot be an expert without working at something hard.

Even our doctor, who is really great with autism...one of the best....admits that there is always something new to learn about autism.

Those of us in the trenches day in and day out....those of us who don't get sleep.....those of us who live and breath the word autism.....we are not even experts!!!

So don't make us feel bad....think before you speak. Oh yeah and that is another skill we are working on.......Think before you speak. Be empathetic. Those are skills we can all work on to avoid hurt feelings.

{{{{Hugs}}}} I am absolutely FLOORED that someone would be so rude as to tell you that autism = bad parenting. REALLY?!?!?! REALLY?!?!?! Some people deserve to be slapped! You are an amazing mama! I know I will never understand what your life is like, thank you for giving us this glimpse, and reminding us to NOT say stupid things! One of the most amazing little girls I've ever met is on the spectrum, and those things that are so frustrating to her, and her family, as they try to figure out how to help her navigate through a world that doesn't understand, is also what endears to to me. She's creative, and brilliant and calls things the way she sees them, and I LOVE that about her! I'm sure there are equally special and amazing things about each of your children too, treasure those things, and ignore the idiots who need to keep their mouths shut! (easier said then done, I know).

LOVE this post! I am a former public school special ed teacher with autism as my focus. I have heard all of those things and was offended as if they were my own kids. My son has not been officially labeled (we homeschool now and I've avoided most testing) but "high functioning autism" would seem to be accurate. Although, who does NOT have some autistic behaviors, right? :) The gluten free diet has helped him immensely but it was very gradual and I honestly (hopefully) thought it was my parenting that was changing things - until I gave him gluten again several months after being GF. But I also get that everyone is different. Just like your example with the hugs - with any kid. It doesn't matter if they are autistic, they are kids first! I've been working on a "label" post - it might have to wait until 'L' week to be published. We label jars, not people. And that goes with us as adults too. We tend to use our past or circumstances to label ourselves...